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Thread: Pre-surgery tips and packing ideas?

  1. #21
    Start doing kegal exercises.

    Get boxer briefs with spandex. 5% spandex is sufficient. They will hold the pads in place.
    I found Depends Guards for Men to work very well.
    After a few months I switched to Depends Shields.

    Clean and lube the catheter 2 x per day. I thought this was excessive so I did it once a day but found it got uncomfortable. When I went to the recommended 2 x per day, there were times I almost forgot I had a catheter in.

    Make sure you get up and walk.

    I wore shorts the entire time I had the catheter and didn't leave the house. I paced around the house, 500 steps at a time, 5 or 6 times a day. I figured at 2 feet per step, that got me about a mile in a day.

    I carried the catheter large bag around in a kids sand bucket. I called it Peabody and we went everywhere together.

    Start out sleeping in a recliner. After a few days I moved to the sofa because I couldn't sleep om my side of the bed because of the leg the catheter tube was attached to.

    Don't sweat getting the catheter removed. It is a non event.

    Measure your continence progress in weeks, not days. Compare week to week. You will have good days and bad days, but week to week you will see progress. Be patient. It usually takes 3 to 6 months to get to where you no longer need any protection.
    There is no right or wrong decision for treatment. Make the decision you are comfortable with and can live with and not second guess if all does not go optimally.

    6/2016 PSA 5.1, negative DRE
    6/2016 Urologist PSA 6.0, %free = <10% chance cancer, negative DRE
    12/2016 PSA 7.7, %free = 50% chance cancer, negative DRE
    2/2017 biopsy Hopkins 5/12, 4 3+3, 1 3+4 (5% 4), perineural invasion
    5/17/2017 Open RP by Dr Alan Partin - Hopkins
    5/2017 Pathology 3+4, T2x, +margin (6mm, 3+3), organ contained except unevaluable at +margin, moderate tumor extent
    seminal vesicles, lymph nodes all neg
    Age: 62 @ surgery
    8/2017 PSA < .1
    11/2017 PSA <.1
    5/2018 uPSA .06, standard .1
    8/2018 uPSA .07, standard .1
    11/2018 uPSA .10, standard .1
    12/29/2018 6 month Lupron shot
    1/22/2019 start SRT, 39 treatments, 5 days per week
    3/15/19 ended SRT with no significant side effects
    6/2019 PSA <.02
    11/2019 PSA < .014 (different lab)

  2. #22
    Senior User
    Join Date
    May 2017
    Posts
    222
    Quote Originally Posted by DavefromMD View Post

    Clean and lube the catheter 2 x per day. I thought this was excessive so I did it once a day but found it got uncomfortable. When I went to the recommended 2 x per day, there were times I almost forgot I had a catheter in.

    Make sure you get up and walk.

    I carried the catheter large bag around in a kids sand bucket. I called it Peabody and we went everywhere together.

    Don't sweat getting the catheter removed. It is a non event.
    I'll repeat Dave's advice ... "Clean and Lube the catheter 2X a day". I didn't do this, not because I didn't want to but because I was never given instructions by the (male) nurse at the Cleveland Clinic so I never realized it was so important. Found out the hard way and it became so painful after a few days that I hated to even get up and walk (Which is very important too). It hurt so bad with even the slightest motion. When I pleaded for help on this forum and was given the advice, it was too late - too painful to even lube.

    And Dave's right - Getting the catheter out would seem painful but the nurse pulled it out so fast that it was out in a moment with no pain.

    Tim
    Age at diagnosis: 57
    8/15/14 PSA 2.9
    3/01/17 PSA 5.9
    5/1/17 Biopsy Results
    6 cores positive out of 12
    1. G 6 - 45%, 2. G7 (3+4) - 70%, 3. G6 - <5%, 4. G7 (3+4) - 40% Perineural Invasion Identified
    5. G6 - 15%, 6. G6 - 15%
    CT and bone scan negative
    Biopsy second opinion by the Cleveland Clinic: Still G3+4 (% of pattern 4 in each of two cores = 5% of tumor)
    Pre Surgery PSA = 6.11, Free PSA = 13%
    Davinci performed August 1, 2017 at Cleveland Clinic
    Catheter out August 9, 2017
    Pathology: Pathologic Stage - pT2: Organ confined, Gleason Score 3+4=7: Grade Group 2.
    % of pattern 4: 1-10%, % of pattern 3: 91-100%
    SV -, BN -, LN -
    Margin of resection is focally positive for tumor, Length of positive margin: 1mm
    Gleason pattern at positive margin: Pattern 3.
    Post-Op PSA History: 9/14/17 <.03, 11/10/17 <.03, 5/10/18 <.03, 7/19/18 <.03, 9/15/18 <.03, 11/14/18 .03, 02/18/19 .05, 3/12/19 .05, 4/22/19 .06
    SRT begin 5/7/19, 70.2 gy total in 35 fractions.

  3. #23
    Thank you all.

    I read the posts and bought some washable pads (4...one for the bed, one for the recliner, on for the car and one to rotate for washing). Got some boxer briefs to hold the depend guards I bought.

    So my question is do I need depends diaper type underwear? I presume when they pull the catheter out, I will need some for a while.

  4. #24
    Quote Originally Posted by IceStationZebra View Post
    Thank you all.

    I read the posts and bought some washable pads (4...one for the bed, one for the recliner, on for the car and one to rotate for washing). Got some boxer briefs to hold the depend guards I bought.

    So my question is do I need depends diaper type underwear? I presume when they pull the catheter out, I will need some for a while.
    I certainly needed them for a relatively short period. Some guys are more fortunate and much less leaky at first, but I wouldn't count on it. I'd have a small supply at hand. You'll see the first few days how things are going and can get more if you need them. I was able to notice control progress by the day for a few days, then by the week for a few weeks, and finally by the month for a few months.

    Djin

  5. #25
    Quote Originally Posted by DjinTonic View Post
    I certainly needed them for a relatively short period. Some guys are more fortunate and much less leaky at first, but I wouldn't count on it. I'd have a small supply at hand. You'll see the first few days how things are going and can get more if you need them. I was able to notice control progress by the day for a few days, then by the week for a few weeks, and finally by the month for a few months.

    Djin
    Thank you.

    So if you have a serious leak, the shields aren't going to be enough is that what I understand?

    When I go back to work if things haven't improved it will probably be a good idea to take a spare pair of pants to work just in case.

  6. #26
    I went through 3 to 4 pads per day at first. I felt no need for diapers. The only leaks I had were because I had cotten boxer briefs that didn't hold the pads in place. Once I switched to boxer briefs with spandex, I had no issues.
    There is no right or wrong decision for treatment. Make the decision you are comfortable with and can live with and not second guess if all does not go optimally.

    6/2016 PSA 5.1, negative DRE
    6/2016 Urologist PSA 6.0, %free = <10% chance cancer, negative DRE
    12/2016 PSA 7.7, %free = 50% chance cancer, negative DRE
    2/2017 biopsy Hopkins 5/12, 4 3+3, 1 3+4 (5% 4), perineural invasion
    5/17/2017 Open RP by Dr Alan Partin - Hopkins
    5/2017 Pathology 3+4, T2x, +margin (6mm, 3+3), organ contained except unevaluable at +margin, moderate tumor extent
    seminal vesicles, lymph nodes all neg
    Age: 62 @ surgery
    8/2017 PSA < .1
    11/2017 PSA <.1
    5/2018 uPSA .06, standard .1
    8/2018 uPSA .07, standard .1
    11/2018 uPSA .10, standard .1
    12/29/2018 6 month Lupron shot
    1/22/2019 start SRT, 39 treatments, 5 days per week
    3/15/19 ended SRT with no significant side effects
    6/2019 PSA <.02
    11/2019 PSA < .014 (different lab)

  7. #27
    Top User
    Join Date
    Aug 2016
    Posts
    1,937
    I needed diapers at night to sleep for about a week. Pads will not catch all while sleeping on your sides or back. The good news is the incontinence stops first when lying down. Less gravity. No diapers at night after about a week for me. Never needed diapers during the day.

    My brother wore diapers for a long time. He was older, early 70s. Recovery is longer the older you are. He didn't do kegels. So learn the kegels. It's not clenching you're a hole. It's lifting the pelvic floor muscles. Don't over do them. You'll be using then naturally as well as when you exercise. They will tire as the day wears on and you will leak more when you're tired. No problem, just something to recognize and not be discouraged.

    No matter what, it will be Niagara falls for a week or so. The catheter causes the bladder to get lazy and forget to work. It takes a few days just to recover from the catheter.

    Remember to drink. We unconsciously try to control the incontinence by drinking less. It can become chronic and low grade. Signs of dehydration are darker urine, lack of energy and headache. The color of lemonade good. The color of apple juice bad.

    Avoid alcohol, caffeine, and carbonated beverages until it all returns. I know you know this, but it's for everyone else too. Some guys can't give them up even for a few months.
    Last edited by Another; 11-15-2019 at 09:51 AM. Reason: Hi

  8. #28
    Quote Originally Posted by Another View Post
    I needed diapers at night to sleep for about a week. Pads will not catch all while sleeping on your sides or back. The good news is the incontinence stops first when lying down. Less gravity. No diapers at night after about a week for me. Never needed diapers during the day.

    My brother wore diapers for a long time. He was older, early 70s. Recovery is longer the older you are. He didn't do kegels. So learn the kegels. It's not clenching you're a hole. It's lifting the pelvic floor muscles. Don't over do them. You'll be using then naturally as well as when you exercise. They will tire as the day wears on and you will leak more when you're tired. No problem, just something to recognize and not be discouraged.

    No matter what, it will be Niagara falls for a week or so. The catheter causes the bladder to get lazy and forget to work. It takes a few days just to recover from the catheter.

    Remember to drink. We unconsciously try to control the incontinence by drinking less. It can become chronic and low grade. Signs of dehydration are darker urine, lack of energy and headache. The color of lemonade good. The color of apple juice bad.

    Avoid alcohol, caffeine, and carbonated beverages until it all returns. I know you know this, but it's for everyone else too. Some guys can't give them up even for a few months.
    Thanks I'll get the diaper depends as well.

    This is definitely going to be a crazy ride.

  9. #29
    Top User
    Join Date
    Aug 2016
    Posts
    1,937
    Quote Originally Posted by IceStationZebra View Post
    Thanks I'll get the diaper depends as well.

    This is definitely going to be a crazy ride.
    If you don't open them you can take them back.
    Born 1953
    family w/PCa; grandfather, 3 brothers
    07-12-04 PSA 1.90
    07-10-06 PSA 2.02
    08-30-07 PSA 3.20
    12-01-11 PSA 5.69 Internist recommends urologist, I say no
    05-16-12 PSA 4.76 manipulate w/diet & supplements
    12-11-12 PSA 5.20, Health system changes to 3 years on testing
    03-07-16 PSA 7.20 Internist adamant on urologist
    DRE smooth, enlarged
    03-14-16 TRUS biopsy-prostatic adenocarcinoma 1%-60% across 8 of 12 samples, Gleason 3+3=6
    03-31-16 MRI pelvis w/o dye
    05-04-16 DaVinci prostatectomy, nerve sparing, Dr. Kent Adkins - recommend
    Final Path; weight 65g, lymph nodes, seminal vesicles, capsule, margin all negative, Gleason 3+4=7, Tumor volume 35%, +pT2c
    Catheter out - 16 days
    Incontinence at 6mos is minimal – no pad
    Cialis 3x/wk & Viagra on occasion
    Begin self-injection needle therapy for erections, stop after 6 due to onset of Peyronie’s
    Erections 100% - 14 months
    5-21-19 PSA <0.02, Zero Club 3.5 years

  10. #30
    Experienced User
    Join Date
    Apr 2019
    Posts
    79
    The order of absorbency from most to least:
    Depends briefs, Depends guards, Depends shields

    I wore the briefs even with the catheter since there is some leakage around the tip of the penis. I'll offer some advice on how I changed the briefs even with the catheter and to minimize floor drips:

    1. It is easiest to remove the brief by splitting the side elastic open at each hip and then slipping it out from between your legs -- it tears fairly easily -- which is much easier than pushing them down. Who wants to bend that much with fresh abdominal incisions?
    2. To change one, I found it best to push the urine bag that is attached to the catheter down through the leg hole of the new brief while still wearing the soiled one, put that leg into the same hole and then the other leg into the other hole. Pull most of the way up, then tear the elastic on the old pair and slip them out, and finally pull the new pair up all the way. Minimizes drips on the floor. The same procedure can be used while sitting on the toilet, you just won't have to deal with the soiled one since you will already have removed it. CAUTION: during bowel movements there can be leakage at the tip of the penis with the catheter in place -- you may need to hold a bit of TP there to contain the urine.
    3. Use the small leg bag and get out of the house if you feel up to it -- it does wonders for your attitude (not the right word, but hey, I've got some ADT brain fog). Sweatpants easily go over it as do loose enough chinos. I had to go and speak at a planning commission meeting with my catheter in -- you can figure out a way to do much more than you think.
    4. Don't let anyone tell you that it is undignified to be wearing adult diapers and don't even think it yourself. It is a medical necessity. Try telling any woman that it is undignified for her to have to use sanitary products once a month and see what reaction you get.
    5. As others have said drink plenty of fluids to flush out your system. This may require quite a few pads after the catheter comes out.
    6. Expect some plumbing mishaps and deal with them with a smile on your face, knowing that they will make good stories in the future.
    6/18 New PCP asks "When was your last PSA level checked?" --> 11.5 so off to URO
    9/18 PSA 12.4, TRUS biopsy 10/18 yields 2 of 12 positive: LA GS6 <5%, RA GS7(3+4) 5% and the 4 is cribriform approaching 50%
    Clinical staging T1c, Decipher biopsy 0.94, 58 years old at DX
    12/18 RARP, pathology GS7(4+3) with cribriform, tumors in 10-15% of gland
    -SVI, -LVI, +EPE, +PNI, +BNI, +SM multifocal >=3mm pattern 4
    pT3a,pNx (lymph nodes inaccessible due to large mesh placement from 15 year ago bilateral hernia repair
    4/19 second opinion of pathology GS8, primary tumor composed of >95% cribriform (4+4), <1% pattern 5 and very minor focus comedo-necrosis, intraductal and postive margin at bladder resection
    still at pT3a,pNx and started six months of ADT 4/19, ART completed 9/13/19
    PSA <0.1 on 1/19, 4/19, 7/19, 10/19

 

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